Hyperthyroid Since 1 year but No Improvement. What Should I do?

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Hi There,

Please if anyone with same condition or any expert can suggest me for my condition:

AMA - 136 IU/ML

T3 - 270

T4 - 14.3

TSH - 0.06

FT3 - 11.8

FT4 - 3.43

Above is my current situation and I am taking 20mg neomarcazole daily. Hyperthyroid was diagnosed in May2017 when I lost around 14Kg. I was 65Kg and dropped to 50Kg in just 3month then got to know about hyperthyroid with Graves disease. Doctor advice me propranolol and Neo-marcazole. After 4 month I got my 8Kg back but i thought by my own that now my thyroid is gone and i should do only yoga without medicine. And after next 4 months i again shed 4 kg and came to know that its back. but it was never gone. So I again started 20mg neomarcazole. This time i am finding very hard in gaining weight. What should I do?

My mind is saying that i should go for Surgery for partial node removal if whole thyroid gland is not overactive.

Can anyone please suggest is it safe to go for surgery if only half of the node is active? What will be life after that? Any complication beside vocal nerve risk? Will hyperthyroid be back again if Graves disease is there?

I do not want to be hypothyroid as then i have to be on much higher dose and for whole life. Otherwise, I would have gone for RAI.

Which one is more worst Hyper or Hypo?

Please any expert help me to settle down my mind..

Regards

Gajay

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8 Replies

  • Posted

    When posting to this Board, it is helpful when you post lab test results to post the ranges for your lab's normal beside your results (these values are usually in brackets beside your results on your lab report)  as these differ from lab to lab and we can better answer your questions if we have that information.  So if I understand, you have both Graves disease and thyroid nodules, is that correct?  I think the first thing hyperthyroid patients need to do is to learn all they can about their disease.  I will email you privately a site where you can get a lot of information.  Secondly, if you have been prescribed antithyroid medication, it is not a good idea to change your dosage without discussing this with your physician,  /At one point, my physician had halved my medication dosage and after a couple of weeks I got a rebound of symptoms so I wanted to increase my dosage a little.  I discussed this with my doctor and she agreed.  Later on as I improved, my doc did all the medication lowering adjustments.  I have Graves disease and what I saw in myself and other Graves patients who post to this Board is that the meds will immediately lower your excessive thyroid hormone but your TSH result will often remain abnormal because the meds while normalizing excessive thyroid hormone do not affect the antibodies that are attacking your TSH receptors in your pituitary gland.  My TSH result remained at less than 0.001 for two years while I was on Methimazole until I did some research and found out I was deficient in a lot of vitamins minerals and amino acids when my body had been running hyperthyroid and these needed to be replaced.  I got tested for these and was confirmed deficient in them.  So I added Regular L-Carnitine 3,000 mg based on a research article I read, and my TSH began to rise. I was also deficient in Vitamin D and took Vitamin D3 gel caps, 1.000 IU per dat.  I read where vitamin D was extremely important to good thyroid function.  I also added Magnesium 200 mg a day.    For myself, I wanted to keep my thyroid and get it working functionally again as opposed to having RAI or surgery as these treatments are not reversible, unlike taking medication for your condition and you will need to forever take replacement thyroid hormone which is artificial and not identical to that produced by your thyroid.  

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    • Posted

      Hi Linda,

      Thank you for your reply it was really helpful.

      I thought all hyperthyroid people know the normal range so did not put in blog. I will keep in mind for future. I am too taking Vitamin B12 and D3 caps. I am also taking multivitamins but struggling to increase my weight. since 3 months i have little pain in heel due to weakness and i have to be in slippers or shoes always so that it should not increase.

      Can you please revert for 2 questions -

      1 - Please confirm for L-Carnitine 3,000mg capsule or tablet name so that i can check on store. I too want to increase my TSH level.

      2 - Prolonged use of thyroid medication result in further bone loss and not advised. Should you or anyone not go for permanent solution?

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    • Posted

      The research article I read about L-Carnitine being useful for hyperthyroid patients indicated a dosage of 3,000 to 4,000 mg. per day.  They don't come in 3,000 capsules, they come in 500 mg or 1000 mg capsules but it also comes in a liquid form.  So I got the liquid form prescribed by my doc as it was easier to take this way.  The Regular L-Carnitine raised my TSH from less than 0.001 to 0.12 which was in the right direction but it did not raise it further so I tried other types of carnitine.  I would always start with the lowest dosage of 500 or 1000 kg to see how I felt on it and increase it from there.  So I experimented and added Acetyl-L:-Carnitine, 500 or 1000 mg to my Regular L-Carnitine 1,000 mg and my TSH just shot right up into the normal range.  However, because of its potency on raising TSH, one has to be careful with using Acetyl in conjunction with thyroid meds because it can send you very hypo very fast so it requires more blood monitoring and more adjustment of dosages of both supplements and I would get my doc to lower my meds dosage since that is his area of expertise.  I believe with the Acetyl that it carries whatever else you are taking across the blood-brain barrier, hence it affected my labs more profoundly,. I was not worried about being on meds long term as my dosage after adding supplements was so minimal.  My doc quickly lowered my dose from 5 to 2.5 daily and then 2.5 3 x a week.  I was diagnosed in 2007 and was on 10 mg daily for two years until I added the supplements and was able to lower dosages.  I have now been off meds since April and so far so good.  My antibodies were no-detectable and all lab tests in a good place within the normal range.

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  • Posted

    Hello, don’t be sad and depressed. Normally patients should be on the medication for about 18 months or a little more and followed by periodic blood work to keep checking the levels. In regards to the surgery, your doctor would be the best to advise you or give you other alternatives.  Also in anything you do make sure your doctor is aware of it.  
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  • Posted

    Hi,

    I actually followed Linda's suggestion here and took Acetyl Cartinitine.  I also took CoQ10 as well.  And I actually got my TSH from undetectable to normal 1.58 in about 2 or 3 months

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    • Posted

      That's cool.. I was about to ask the brand name as I have tried to search on Chemist but failed to get Acetyl-L-Carnitine. And the L-Carnitine i got is of only 500mg. Can you please confirm me the brand name?

      Also as your TSH is now improved so is your weight? How much you gained after adding Acetyl Carnitine with L-Carnitine. Sorry for being curious here but do you also exercise for Carnitine?

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    • Posted

      I get my Acetyl Carnitine from whole foods.  Just google Acetyle Carnitine wholefoods, you would see.  There are several brands.  i think they are all the same.

      My weight didn't fluctuate that much. When my TSH was undetectable, i was about 140.  Now i am about 148 lb.

      There are two kinds of Carnitines.  Total Carnitine, and Acetyle carnitine.  Based on Linda's posts, Total carnitine seem to be the slow working kind of carnitine.  

      I have gone back to 3-4 times of gym per week after my TSH went back to normal (i kinda want to go back to 140 lb...)

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